I CAN hear you now!

I haven’t said a whole lot here about our move. Maybe that’s odd, given it’s the biggest thing happening in our lives right now. It’s a little tricky to know what to say, though, because circumstances seem to change on a daily – sometimes almost hourly – basis. The bottom line is that nothing about our plan to move has been simple. It was a difficult decision to make, and now that the ball is rolling, it’s a bumpy ride. I won’t drag you through the minutia and mini-dramas; I subject my parents and a few close friends to that and hope they still love me when it’s over. Suffice it to say we currently have no idea exactly what lies ahead. We made the decision this week to walk away from the house we were contracted to buy due to growing concerns about the property, and we are facing some challenges in the sale of our home, as well. We continue to pray to the only One who knows all ends and trust we’ll come out of this where He wants us to be.

I have a suspicion I’m being allowed another growth opportunity, because a state of limbo is my very least favorite place to be. I do not like uncertainty. I want to make plans, take action, forge ahead. I am getting a lot of practice at doing the exact opposite: sitting back, waiting patiently (ahem), allowing circumstances to unfold. It does not come naturally. I realize in times like this that for all my talk about faith through the unexpected, it’s still an area where I struggle. I trust that God is going to work all this out. I really do. I just wish He’d give me a peek ahead so I don’t have to do all this waiting and wondering! 

Meanwhile, life moves on in other areas. Lina was a very sick girl for a lot of this week but is on the mend, thanks to good old amoxicillin. (We suspect scarlet fever. Add that to the list of scary-sounding diseases I used to think were obsolete.)

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Poor, sick baby fell asleep on the dirty laundry.

 

And then, today, Lina had an audiologist appointment. (I realize I’ve buried the lede here…) Because of her early diagnosis of conductive hearing loss, she goes in for periodic hearing tests and checks on her bone anchored hearing aid. The booth hearing tests they use can be problematic for young kids. They hadn’t gotten great results from her previously, because she wasn’t fully participating in the test. I had low expectations for today’s appointment. Imagine my surprise when Lina turned immediately in response to nearly every noise the audiologist played through speakers, over a range of frequencies and volumes. Girl tested at normal hearing, without her hearing aid! They will repeat the test in three months, and if the results are similar, they will remove the conductive hearing loss diagnosis. It was pretty exciting news, and a huge relief for me. I’ve struggled with a lot of guilt over how little use Lina gets from her hearing aid, thanks to her refusal to leave it on her head. I can now silence the guilt gremlins and know that my baby girl is likely hearing me just fine.

In a week of plentiful challenges, I’m so grateful for the win on this one.

Hearing and speech – or, she’s going to rock this

Need to know where the Vanderbilt Bill Wilkerson Center is? Trying to find an office in the Vandy Children’s Doctors’ Office Tower? Wondering where to park in the South or East Garage? I am now the girl to ask.

In the last week, Lina has seen the audiologist about hearing aids, followed immediately by her first visit to the pediatric endocrinologist for management of her hypothyroidism, followed yesterday by a visit to the pediatric speech-language pathology clinic for speech therapy evaluation. At least Vanderbilt appointments no longer involve mild panic over finding my way to the proper spot in that mini-metropolis.

So, here comes another bulleted list of appointment highlights. Probably not the most interesting reading, but full disclosure: this is likely to be a recurring feature.

  • The hearing aid decision was more complicated than the ENT led me to believe. He seemed to indicate the next step would be a bone-anchored hearing aid, but in talking with the audiologist, there was also a strong case to be made for trying traditional (and less expensive) behind-the-ear aids. We talked over the pros and cons, and I opted for a loaner set of behind-the-ear aids. We will pay for the custom in-ear pieces that attach to the aids, but it seemed to make sense to hold off on buying her own full set, as there is a chance the standard aids will not work well with Lina’s tiny ear canals. The loaners will be available to us for up to three months. Besides helping us determine if they even work for her, it will also buy us time until her next visit with the ENT, when we can hopefully get more information about longer-term solutions. The big question is how long it will be before Lina’s ear canals are big enough for tubes, which we hope may make the hearing aids unnecessary long-term. (This is by no means guaranteed.)
  • The endocrinologist visit was pretty straight-forward. Lina’s thyroid production is only slightly low; the doctor said that in some cases with Down syndrome, young babies with low numbers may actually outgrow the problem. She suggested that if things still look pretty good by the time she turns three, we may be able to try taking her off the medication. We have thankfully been able to switch from a liquid medication that had to be compounded at a special pharmacy every eight days to a much more manageable tablet I crush and give her with a little water.
  • The speech evaluation was very interesting to me. I loved the therapist we met with (who is unfortunately leaving to get married in a month), and she was very encouraging. This evaluation was the first time anyone had given us quantitative information about Lina’s development. Based on information I provided and observing Lina’s interaction with people and toys, the therapist was able to give her a numerical score for several areas, including hearing, communication and cognitive. Lina scored on the low end of the normal range for cognitive and in the mild delay range on everything else. Her milestones are on par with a typically-developing 4-month-old. (That part was a little hard to hear.) The therapist was very pleased with the progress she has made thus far on her own and felt that with speech therapy (twice monthly for now), she could continue to make steady progress. She said that therapy should be able to help avoid a tendency for developmental gaps to widen after kids turn one. She felt Lina’s current progress has been helped a lot by being close to me all day, in a relatively quiet home environment with a lot of one-on-one interaction. I hadn’t thought too much about physical proximity and background noise, but it makes sense that those things would be factors for a child with hearing loss.

Running around to so many appointments has been exhausting, but I continue to be thankful that we have good resources for managing the challenges Lina is facing. I feel really good about the experts on Team Lina, and I like that we’re being proactive with therapy. She’s going to rock at this.  

And from the last few days, for fun:

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Of passing years and ear wax

We arrived home last night from a weekend in North Georgia, where Jon and I attended our 15-year high school reunion. (Every five years, I am reminded how nice it is that we share our graduating class.) The showing was small, but we had fun catching up with former classmates and revisiting the campus where we met and spent a lot of happy times. It usually seems a lifetime ago, but being on campus, where so much is the same (including that awful mural our class painted in the religion room), it felt like yesterday. I badly missed someone, though. Jennifer, my best friend from those GCA days, died this past November. As I flipped through yearbooks, I paused over so many pictures of a cute, smiling blonde who also occupies so many of my memories from that place. She should have been there, flipping through those yearbooks with us. I talked about her a little, but I thought about her a lot.

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In today’s news, Lina had her first appointment with a pediatric ENT at Vanderbilt. (Actually, we were scheduled to meet with the nurse practitioner.) It was not a picnic for either of us.

You may remember that Lina failed two newborn hearing screens in the NICU. She was then referred to the audiology department at Vanderbilt for a follow-up screening that showed moderate conductive hearing loss in both ears. This means something is preventing the sound from clearly reaching the ear drums: in this case, likely a build-up of fluid. The audiologist described Lina’s hearing as sounding like she was under water. Another follow-up screen showed continued blockages in both ears, as did a repeat test today.

I’ll try to shorten our 3 1/2-hour experience to the cliff notes. We met with the nurse practitioner, who indicated we would be scheduling an appointment to place ear tubes to drain the fluid, which should significantly improve Lina’s hearing. She walked me through the relatively simple procedure, answered my many questions thoroughly, and then sent the nurse in to provide further information on follow-up care. We were then to meet briefly with the ENT himself, who would be the one to do the procedure. He was brusque and rushed, but the summary is that he was concerned about the size of Lina’s ear canals. He wanted to verify they were actually big enough to place the tubes. He was not able to see to the ear drum due to a build-up of wax. Thus commenced a thoroughly unpleasant experience in which he used a metal tool and then a suction device to remove wax from a strapped-down, wailing Lina’s ears while the nurse held her head still and I wiped her tears (and struggled to hold myself together).

The final verdict is that Lina’s ear canals are definitely too small for tubes. Her canals will grow with time, so we will go back in August for a re-check. In the meantime, we have been referred back to the audiology department for a bone anchored hearing aid. In adults, an implant would be attached to the skull bone, but in Lina’s case, they will use a headband to hold the device in place. I have more learning to do about this – an informational DVD is awaiting my attention – but the gist is that this aid will help bypass the blocked canals to improve Lina’s hearing at a time critical to speech development.

It was a tough day. I am feeling better tonight, as I’ve had time to process and recover from the trauma of the afternoon. We know Lina’s diagnosis of Down syndrome will mean a series of challenges to be faced in their time. This is today’s. We will do whatever is necessary to give her the best chance of hearing and learning speech.

A few bright spots of the day: Corin was so, so well behaved through that entire appointment, brandishing his new toy stethoscope in the real doctor’s office. And all the office staff thought Lina was so cute. Because, let’s face it, she is.